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OBJECTIVE: The objective of this study was to measure the appropriateness of end-of-life care for children who died with neurologic conditions. STUDY DESIGN: Based on linked routinely collected databases, we conducted a population-level decedent retrospective cohort study of children with neurologic conditions who died in Belgium between 2010 and 2017. We measured a set of 22 face-validated quality indicators. The set concerns 12 indicators of potentially appropriate end-of-life care (eg, specialized comfort medication, physician contact, continuous care) and 10 indicators of potentially inappropriate end-of-life care (eg, diagnostic tests, phlebotomy). We performed ANOVA for predictors (age, sex, disease category, nationality, having siblings, year of death) for scales of appropriate and inappropriate care. RESULTS: Between 2010 and 2017, 139 children with neurologic conditions died in Belgium. For potentially appropriate care, in the last 30 days, 76% of children received clinical care, 55% had continuous care relationships, 17% had contact with a general physician, 8% of children received specialized comfort medication, and 14% received care from a palliative care team. For potentially inappropriate care, in the last 14 days, 45% had blood drawn and 27% were admitted to intensive care unit. CONCLUSIONS: Our study found indications of appropriate as well as inappropriate end-of-life care for children who died with neurologic conditions. These findings reveal a substantial margin for potential quality improvement, in regard to palliative care provision, multidisciplinary care, financial support, specialized comfort medication, clinical follow-up, general physician contact, diagnostics, and blood drawing.

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Background: Little is known about place of death in Latin America, although this data are crucial for health system planning. This study aims to describe place of death and associated factors in Latin America and to identify factors that contribute to inter-country differences in place of death. Methods: We conducted a total population observational study using death certificates of the total annual decedent populations in 12 countries (Argentina, Brazil, Chile, Colombia, Costa Rica, El Salvador, Guatemala, Ecuador, Mexico, Paraguay, Peru, and Uruguay) for the most recent available year (2016, 2017, or 2018). Data were analysed regarding place of death and multivariable logistic regression with place of death as the dependent variable was used to examine associated clinical and sociodemographic factors (independent variables) in each of the countries. Results: The total study sample was 2 994 685 deaths; 31.3% of deaths occurred at home, and 57.6% in hospitals. A strong variation was found among the countries with home deaths ranging from 20% (Brazil) to 67.9% (Guatemala) and hospital deaths from 22.3% (Guatemala) to 69.5% (Argentina). These differences between countries remained largely unchanged after controlling for sociodemographic factors and causes of death. The likelihood of dying at home was consistently higher with increasing age, for those living in a rural area, and for those with a lower educational level (except in Argentina). Conclusions: Most deaths in Latin America occur in hospitals, with a strong variation between countries. As clinical and sociodemographic factors included in this study did not explain country differences, other factors such as policy and health care system seem to have a crucial impact on where people die in Latin America.

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OBJECTIVE: To develop and face-validate population-level indicators for potential appropriateness of end-of-life care, for children with cancer, neurologic conditions, and genetic/congenital conditions, to be applied to administrative health data containing medication and treatment variables. STUDY DESIGN: Modified RAND/University of California at Los Angeles appropriateness method. We identified potential indicators per illness group through systematic literature review, scoping review, and expert interviews. Three unique expert panels, a cancer (n = 19), neurology (n = 21), and genetic/congenital (n = 17) panel, participated in interviews and rated indicators in individual ratings, group discussions, and second individual ratings. Each indicator was rated on a scale from 1 to 9 for suitability. Consensus was calculated with the interpercentile range adjusted for symmetry formula. Indicators with consensus about unsuitability were removed, those with consensus about suitability were retained, and those with lack of consensus deliberated in the group discussion. Experts included pediatricians, nurses, psychologists, physiotherapists, pharmacologists, care coordinators, general practitioners, social workers from hospitals, care teams, and general practice. RESULTS: Literature review and expert interviews yielded 115 potential indicators for cancer, 111 for neurologic conditions, and 99 for genetic/congenital conditions. We combined similar indicators, resulting in respectively 36, 32, and 33 indicators per group. Expert scoring approved 21 indicators for cancer, 24 for neurologic conditions, and 23 for genetic/congenital conditions. CONCLUSIONS: Our indicators can be applied to administrative data to evaluate appropriateness of children's end-of-life care. Differences from adults' indicators stress the specificity of children's end-of-life care. Individual care and remaining aspects, such as family support, can be evaluated with complementary tools.

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BACKGROUND: In resource-poor countries, including in Latin American and the Caribbean, empirical information about the characteristics and incidence of medical end-of-life decisions (MELDs)-withholding or withdrawing potentially life-prolonging medical treatments-is largely absent. METHODS: The aim was to describe the incidence and decision-making characteristics of MELDs taken prior to the death of people who died at home in Trinidad and Tobago (T&T). A mortality follow-back study was used where a representative sample of deaths occurring at home in 2018 was drawn from death certificates at the national death registry. The general practitioners who certified the deaths were sent a questionnaire. RESULTS: The sample consisted of 309 adult deaths and the response rate was 31% (N=96). Physicians were: mostly male (79.2%), practiced medicine for more than twenty-years (63.5%), had no formal palliative care training (69.8%). Non-sudden deaths represented 76% (N=73), of these, medications to alleviate pain and symptoms in the last 7 days of life were administered in 65.8%, including opioids 21%. Potentially life-prolonging treatments were withheld in 9.6% but none withdrawn. No physician/patient discussions about various end-of-life treatment options occurred in 61.6%. Compared to physicians with no formal training in palliative care, those with training more often: prescribed or administered opioids in the last 7 days of life (35.7% vs. 11.1%, P=0.01), had discussions with patients about end-of-life treatment options (60.7% vs. 24.4%, P=0.002), and discussed medication use to alleviate pain and other symptoms with patients (50% vs. 17.8%, P=0.004). CONCLUSIONS: Differences in the care and treatment general practitioners provided to their patients could be associated with them having been formally trained in palliative care. The necessary support to further develop palliative care in T&T is needed.

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[ABSTRACT]. Objective. This paper assesses the availability and quality of death certificate data in Latin America and the feasibility of using these data to study place of death and associated factors. Methods. In this comparative study, we collected examples of current official death certificates and digital data files containing information about all deaths that occurred during 1 year in 19 Latin American countries. Data were collected from June 2019 to May 2020. The records for place of death and associated variables were studied. The criteria for data quality were completeness, number of ill-defined causes of death and timeliness. Results. All 19 countries provided copies of current official death certificates and 18 of these registered the place of death. Distinguishing among hospital or other health care institution, home and other was possible for all countries. Digital data files with death certificate data were available from 12 countries and 1 region. Three countries had data considered to be of high quality and seven had data considered to be of medium quality. Categories for place of death and most of the predetermined factors possibly associated with place of death were included in the data files. Conclusions. The quality of data sets was rated medium to high in 10 countries. Hence, death certificate data make it feasible to conduct an international comparative study on place of death and the associated factors in Latin America.

[RESUMEN]. Objetivo. En este artículo se evalúa la disponibilidad y la calidad de los datos del certificado de defunción en América Latina y la factibilidad de emplear estos datos para estudiar el lugar de defunción y factores asociados. Métodos. En este estudio comparativo, se recogieron ejemplos de certificados oficiales de defunción actuales y archivos digitales de datos que contenían información acerca de todas las defunciones que ocurrieron durante un año en 19 países latinoamericanos. Se recopilaron datos desde junio del 2019 hasta mayo del 2020. Se estudiaron los registros del lugar de la muerte y las variables asociadas. Los criterios para determinar la calidad de los datos fueron la exhaustividad, el número de causas de muerte mal definidas y la presentación oportuna de la información. Resultados. Los 19 países proporcionaron copias de los certificados oficiales de defunción actuales; en 18 de estos se registraba el lugar de la muerte. En todos los países fue posible distinguir entre hospital u otra institución de atención de salud, el hogar y otros. Se obtuvieron los archivos de datos digitales con los datos del certificado de defunción de 12 países y una región. Tres países tenían datos considerados de buena calidad y siete tenían datos considerados de calidad media. En los archivos de datos se incluyeron categorías para lugar de defunción y la mayoría de los factores predeterminados posiblemente asociados con el lugar de defunción. Conclusiones. La calidad de los conjuntos de datos se calificó de media a buena en 10 países. En consecuencia, es factible realizar un estudio internacional comparativo sobre el lugar de defunción y los factores asociados en América Latina con los datos del certificado de defunción.

[RESUMO]. Objetivo. Este estudo avalia a disponibilidade e a qualidade dos dados das declarações de óbito na América Latina e a viabilidade de usar esses dados para estudar o local do óbito e fatores associados. Métodos. Neste estudo comparativo, coletamos exemplos de declarações de óbito oficiais atuais e arquivos de dados digitais contendo informações sobre todos os óbitos que ocorreram durante 1 ano em 19 países latinoamericanos. Os dados foram coletados no período de junho de 2019 a maio de 2020. Foram estudados os registros do local do óbito e variáveis associadas. Os critérios de qualidade dos dados foram preenchimento completo, número de causas mal definidas de morte e oportunidade. Resultados. Todos os 19 países forneceram cópias das declarações de óbito oficiais atuais, e 18 deles registraram o local do óbito . Foi possível distinguir em todos os países entre hospital ou outra instituição de saúde, lar ou outro local. Arquivos de dados digitais com os dados das declarações de óbito foram disponibilizados por 12 países e 1 região. Três países tiveram dados considerados de alta qualidade, e sete tiveram dados considerados de qualidade média. As categorias de local do óbito e a maioria dos fatores predeterminados possivelmente associados ao local do óbito foram incluídos nos arquivos de dados. Conclusões. A qualidade dos conjuntos de dados foi classificada como média a alta em 10 países. Portanto, os dados de declarações de óbito possibilitam a realização de um estudo comparativo internacional sobre local do óbito e fatores associados na América Latina.

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Objective: this paper assesses the availability and quality of death certificate data in Latin America and the feasibility of using these data to study place of death and associated factors. Methods: in this comparative study, we collected examples of current official death certificates and digital data files containing information about all deaths that occurred during 1 year in 19 Latin American countries. Data were collected from June 2019 to May 2020. The records for place of death and associated variables were studied. The criteria for data quality were completeness, number of ill-defined causes of death and timeliness. Results: all 19 countries provided copies of current official death certificates and 18 of these registered the place of death. Distinguishing among hospital or other health care institution, home and other was possible for all countries. Digital data files with death certificate data were available from 12 countries and 1 region. Three countries had data considered to be of high quality and seven had data considered to be of medium quality. Categories for place of death and most of the predetermined factors possibly associated with place of death were included in the data files. Conclusions: the quality of data sets was rated medium to high in 10 countries. Hence, death certificate data make it feasible to conduct an international comparative study on place of death and the associated factors in Latin America.

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OBJECTIVES: Low/middle-income countries, particularly Small Island Developing States, face many challenges including providing good palliative care and choice in place of care and death, but evidence of the circumstances of dying to inform policy is often lacking. This study explores where people die in Trinidad and Tobago and examines and describes the factors associated with place of death. METHODS: A population-level analysis of routinely collected death certificate and supplementary health data where the unit of analysis was the recorded death. We followed the Reporting of Studies Conducted Using Observational Routinely Collected Health Data reporting guidelines, an extension of Strengthening the Reporting of Observational Studies in Epidemiology, on a deidentified data set on decedents (n=10 221) extracted from International Statistical Classification of Diseases version 10 coded death records for the most recent available year, 2010. RESULTS: Of all deaths, 55.4% occurred in a government hospital and 29.7% in a private home; 65.3% occurred in people aged 60 years and older. Cardiovascular disease (23.6%), malignancies (15.5%) and diabetes mellitus (14.7%) accounted for over half of all deaths. Dying at home becomes more likely with increasing age (70-89 years (OR 1.91, 95% CI 1.73 to 2.10) and 90-highest (OR 3.63, 95% CI 3.08 to 4.27)), and less likely for people with malignancies (OR 0.85, 95% CI 0.74 to 0.97), cerebrovascular disease (OR 0.61, 95% CI 0.51 to 0.72) and respiratory disease (OR 0.74, 95% CI 0.59 to 0.91). CONCLUSION: Place of death is influenced by age, sex, race/ethnicity, underlying cause of death and urbanisation. There is inequality between ethnic groups regarding place of care and death; availability, affordability and access to end-of-life care in different settings require attention.

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BACKGROUND: With over 1 million HIV-related deaths annually, quality end-of-life care remains a priority. Given strong public preference for home death, place of death is an important consideration for quality care. This 11 country study aimed to i) describe the number, proportion of all deaths, and demographics of HIV-related deaths; ii) identify place of death; iii) compare place of death to cancer patients iv), determine patient/health system factors associated with place of HIV-related death. METHODS: In this retrospective analysis of death certification, data were extracted for the full population (ICD-10 codes B20-B24) for 1-year period: deceased's demographic characteristics, place of death, healthcare supply. RESULTS: i) 19,739 deaths were attributed to HIV. The highest proportion (per 1000 deaths) was for Mexico (9.8‰), and the lowest Sweden (0.2‰). The majority of deaths were among men (75%), and those aged <50 (69.1%). ii) Hospital was most common place of death in all countries: from 56.6% in the Netherlands to 90.9% in South Korea. The least common places were hospice facility (3.3%-5.7%), nursing home (0%-17.6%) and home (5.9%-26.3%).iii) Age-standardised relative risks found those with HIV less likely to die at home and more likely to die in hospital compared with cancer patients, and in most countries more likely to die in a nursing home. iv) Multivariate analysis found that men were more likely to die at home in UK, Canada, USA and Mexico; a greater number of hospital beds reduced the likelihood of dying at home in Italy and Mexico; a higher number of GPs was associated with home death in Italy and Mexico. CONCLUSIONS: With increasing comorbidity among people ageing with HIV, it is essential that end-of-life preferences are established and met. Differences in place of death according to country and diagnosis demonstrate the importance of ensuring a "good death" for people with HIV, alongside efforts to optimise treatment.

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[ABSTRACT]. Objectives. To identify common themes documented in the literature on palliative and end-of-life care in English-speaking Caribbean small island developing states (SIDS), and to describe barriers, improvement strategies, and suggested ways forward. Methods. In 2015, we conducted a systematic scoping review of relevant literature identified through the MEDLINE and Web of Science databases. We supplemented that with searches of other electronic and hard-copy sources to map key concepts and summarize themes. Results. Primary data and other literature from and about English-speaking Caribbean nations are relatively scarce. The available literature offers an overview of the existing situation in the region and explores why palliative and end-of-life care is limited there. This review identified barriers in five main areas recurring across this literature: i) culture and attitudes of health care providers, patients, and those close to them towards terminal illness and death; ii) opioid availability and use; iii) limited development of palliative care services; iv) unmet palliative care needs; and v) limited research on palliative or end-of-life care. Conclusions. Our analysis helps to document the need for palliative and end-of-life care in Caribbean SIDS and highlights suggestions for moving forward with related practice, policy, and research.

[RESUMEN]. Objetivos. Establecer los temas comunes documentados en la bibliografía sobre los cuidados paliativos y al final de la vida en los pequeños estados insulares en desarrollo del Caribe de habla inglesa, y describir los obstáculos, las estrategias de mejora y los pasos futuros que se sugieren. Métodos. En el 2015, realizamos un examen sistemático exploratorio de la bibliografía pertinente encontrada por medio de MEDLINE y las bases de datos de Web of Science. Complementamos el examen con búsquedas de otras fuentes electrónicas e impresas para esquematizar los conceptos fundamentales y resumir los temas. Resultados. Los datos primarios y otra bibliografía sobre las naciones del Caribe de habla inglesa o provenientes de ellas son relativamente escasos. La bibliografía disponible ofrece un panorama de la situación existente en la región y explora las razones por las que los cuidados paliativos y al final de la vida son limitados en estas naciones. La presente revisión detectó obstáculos en cinco áreas principales, recurrentes en toda la bibliografía: a) factores culturales y actitud de los prestadores de atención de salud, los pacientes y las personas cercanas a ellos hacia la enfermedad terminal y la muerte; b) disponibilidad y uso de opioides ; c) desarrollo limitado de los servicios de cuidados paliativos; d) necesidades de cuidados paliativos no atendidas, y e) investigación limitada sobre los cuidados paliativos o al final de la vida. Conclusiones. Nuestro análisis ayuda a documentar la necesidad de cuidados paliativos y al final de la vida en los pequeños estados insulares en desarrollo del Caribe de habla inglesa, y pone de relieve sugerencias para avanzar en la práctica, la política y la investigación relacionadas.

[RESUMO]. Objetivos. Identificar temas comuns documentados na literatura científica sobre cuidados paliativos e de pacientes terminais nos pequenos Estados insulares em desenvolvimento do Caribe e descrever barreiras, estratégias de melhoria e rumos a serem tomados. Métodos. Em 2015, foi realizada uma revisão sistemática do tipo scoping review da literatura científica relevante identificada nas bases de dados MEDLINE e Web of Science. Para complementar, foram feitas buscas em outras fontes eletrônicas e impressas para mapear os conceitos básicos e resumir os temas. Resultados. Os dados primários e outros dados da literatura provenientes e acerca dos países de língua inglesa do Caribe são relativamente escassos. A literatura disponível oferece um panorama geral da situação da região e examina por que os cuidados paliativos e dos pacientes terminais são limitados. A revisão permitiu identificar barreiras em cinco áreas principais recorrentes nos estudos: i) cultura e atitudes dos profissionais da saúde, dos pacientes e das pessoas próximas que acompanham o paciente com doença terminal e morte; ii) disponibilidade e uso de opioides; iii) progresso restrito dos serviços de cuidados paliativos; iv) necessidades da atenção paliativa não atendidas e v) pesquisas pouco extensas sobre cuidados paliativos e dos pacientes terminais. Conclusões. Nossa análise contribui para documentar a necessidade de cuidados paliativos e dos pacientes terminais nos pequenos Estados insulares em desenvolvimento do Caribe e sugere o rumo a ser tomado com relação a práticas, políticas e pesquisas.

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ABSTRACT Objectives To identify common themes documented in the literature on palliative and end-of-life care in English-speaking Caribbean small island developing states (SIDS), and to describe barriers, improvement strategies, and suggested ways forward. Methods In 2015, we conducted a systematic scoping review of relevant literature identified through the MEDLINE and Web of Science databases. We supplemented that with searches of other electronic and hard-copy sources to map key concepts and summarize themes. Results Primary data and other literature from and about English-speaking Caribbean nations are relatively scarce. The available literature offers an overview of the existing situation in the region and explores why palliative and end-of-life care is limited there. This review identified barriers in five main areas recurring across this literature: i) culture and attitudes of health care providers, patients, and those close to them towards terminal illness and death; ii) opioid availability and use; iii) limited development of palliative care services; iv) unmet palliative care needs; and v) limited research on palliative or end-of-life care. Conclusions Our analysis helps to document the need for palliative and end-of-life care in Caribbean SIDS and highlights suggestions for moving forward with related practice, policy, and research.

RESUMEN Objetivos Establecer los temas comunes documentados en la bibliografía sobre los cuidados paliativos y al final de la vida en los pequeños estados insulares en desarrollo del Caribe de habla inglesa, y describir los obstáculos, las estrategias de mejora y los pasos futuros que se sugieren. Métodos En el 2015, realizamos un examen sistemático exploratorio de la bibliografía pertinente encontrada por medio de MEDLINE y las bases de datos de Web of Science. Complementamos el examen con búsquedas de otras fuentes electrónicas e impresas para esquematizar los conceptos fundamentales y resumir los temas. Resultados Los datos primarios y otra bibliografía sobre las naciones del Caribe de habla inglesa o provenientes de ellas son relativamente escasos. La bibliografía disponible ofrece un panorama de la situación existente en la región y explora las razones por las que los cuidados paliativos y al final de la vida son limitados en estas naciones. La presente revisión detectó obstáculos en cinco áreas principales, recurrentes en toda la bibliografía: a) factores culturales y actitud de los prestadores de atención de salud, los pacientes y las personas cercanas a ellos hacia la enfermedad terminal y la muerte; b) disponibilidad y uso de opioides; c) desarrollo limitado de los servicios de cuidados paliativos; d) necesidades de cuidados paliativos no atendidas, y e) investigación limitada sobre los cuidados paliativos o al final de la vida. Conclusiones Nuestro análisis ayuda a documentar la necesidad de cuidados paliativos y al final de la vida en los pequeños estados insulares en desarrollo del Caribe de habla inglesa, y pone de relieve sugerencias para avanzar en la práctica, la política y la investigación relacionadas.

RESUMO Objetivos Identificar temas comuns documentados na literatura científica sobre cuidados paliativos e de pacientes terminais nos pequenos Estados insulares em desenvolvimento do Caribe e descrever barreiras, estratégias de melhoria e rumos a serem tomados. Métodos Em 2015, foi realizada uma revisão sistemática do tipo scoping review da literatura científica relevante identificada nas bases de dados MEDLINE e Web of Science. Para complementar, foram feitas buscas em outras fontes eletrônicas e impressas para mapear os conceitos básicos e resumir os temas. Resultados Os dados primários e outros dados da literatura provenientes e acerca dos países de língua inglesa do Caribe são relativamente escassos. A literatura disponível oferece um panorama geral da situação da região e examina por que os cuidados paliativos e dos pacientes terminais são limitados. A revisão permitiu identificar barreiras em cinco áreas principais recorrentes nos estudos: i) cultura e atitudes dos profissionais da saúde, dos pacientes e das pessoas próximas que acompanham o paciente com doença terminal e morte; ii) disponibilidade e uso de opioides; iii) progresso restrito dos serviços de cuidados paliativos; iv) necessidades da atenção paliativa não atendidas e v) pesquisas pouco extensas sobre cuidados paliativos e dos pacientes terminais. Conclusões Nossa análise contribui para documentar a necessidade de cuidados paliativos e dos pacientes terminais nos pequenos Estados insulares em desenvolvimento do Caribe e sugere o rumo a ser tomado com relação a práticas, políticas e pesquisas.

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